Northern Nevada Children's Cancer Foundation

Meet Our Kids

Brad’s Story

by Suzanna Hartman, May 2009

Brad Zugel, a seemingly healthy 11-year old student at Spanish Springs Elementary School, was taken to urgent care on Sunday, September, 28, 2008, for a cough. Brad was preparing to leave on a field trip to Point Benita in San Francisco, California the next day.

Brad’s parents, Kevin & Michelle, wanted to have a prescription on hand in the event his cough got worse on the trip. Because Brad’s cough was persistent and was accompanied by pain in his side, the urgent care physician ordered a chest x-ray to check for pneumonia. Due to irregularities on the x-ray, the urgent care doctor ordered a CT scan at Renown Medical Center that same night. On Monday, September 29, 2008, Brad was already on the bus with his classmates when his father received a phone call advising him that Brad must be pulled off the bus and taken immediately to Oakland Children’s Hospital. The CT scan indicated a mass in Brad’s chest area. Within a few days Brad was diagnosed with Lymphoblastic Lymphoma. Brad’s treatment is planned to last two years, the most intense phase of the treatment has just passed and Brad is currently in the maintenance phase, which consists of repeating cycles of daily oral chemotherapy and lumbar puncture treatments given at Renown Medical Center.

Brad is a bright, fun-loving, energetic young man who is an avid baseball player, a music lover and brother to 13-year old Jake who attends middle school. Brad is a student in Miss Chaney’s sixth grade class and is a favorite among fellow students, teachers and his many friends. Since his diagnosis Brad has not attended class at school due to being run down from his treatment and the side effects of a weakened, at times almost non-existent, immune system. Although the isolation is par for the course with cancer treatment, it is far from the normal busy life of an active boy of 11 years. It has been hard on Brad being away from his friends. Jake, Brad’s older brother by two years, is his best buddy and they have kept each other company during these past hard months. Brad loves playing guitar and saves his money only to be spent on music equipment. To say that he is really into guitars is probably the understatement of the year. If anyone is looking for an 11-year old guitar aficionado, then Brad’s your guy. Brad is a character most of the time, but through all of this he has learned and lived the definitions of humility and compassion. When asked what he was thankful for during Thanksgiving, Brad said he is most thankful for medicine, doctors, his parents and brother, family, friends, technology, research, transportation, shelter, food, his pets, and lastly he said life! “I was very proud of him when we were discussing this,” reflects his mother, “what an impressive list for an 11-year old.” This list of things would not have existed last year, or even this year, without his diagnosis. He has grown to a new level because he had to. He has discovered a new passion and has expressed that he wants to volunteer someday at the hospital with the sick kids. He has seen many kid volunteers and he thinks it’s pretty cool that they don’t even get paid; they just do it for free! 

Having a child diagnosed with cancer affects the entire family and forever changes the lives of each family member. “Six months is a lifetime when giving your child intense chemo every day,” shares mom Michelle. “We all live in a cancer world.” She goes on to say when raising a child with cancer there are so many different dimensions to think of psychological well being, nutrition, social, activities, school…as parents we’re not psychologists but we have to do what we can.

Navigating their way through this strange new world of cancer, the Zugel’s have found a great appreciation for Angel Kiss Foundation. In their words, here are few of the reasons that AKF is so special:

• It has been so valuable to us that there is an organization out there that actually works full-time to support us, in this our most trying time.
• Not only have AKF and Julie (Executive Director) offered support, they understand because they have helped so many families in need.
• We have been able to depend on them for financial needs when we really needed it the most. Having a Foundation so willing to help with your mortgage, power bill and medical costs in a time when the whole country is feeling the crunch and on top of that having a child with cancer. It is a huge weight off when we can be with our son instead of worrying about how we are going to make it from one month to the next.

They truly are Angels. – The Zugels

Giovanni’s Story

by Amy Riley, board member, November 2008

Giovanni Hartman is learning how to write his name. When he’s not working on his alphabet, this high-energy, rambunctious five-year old, loves playing with his little sister and drawing pictures. He also loves to ride his tricycle around the house and get into trouble! But every so often, another child will ask him a question about the tube pinned to his shirt and with the unabashed honesty that comes naturally to a five-year old, Giovanni will show curious kids how the tube (a broviac) is actually connected to his chest. Sometimes, he’ll try to explain how the tube is working to help him fight the cancer in his body. “Giovanni is amazing,” says Mom, Suzanna, “Of course he asks questions and gets angry sometimes— he’s five. But he’s had to grow up so fast, and deal with such heavy subjects, and try and process what he’s going through.”

It was just last year, a few weeks after Christmas, when Giovanni’s parents began to suspect something was wrong. The hustle and bustle of the holidays was followed by the exciting news that his mother was pregnant, but the typically precocious Giovanni seemed quieter and calmer than usual. A few weeks later, a visiting aunt noted that her nephew looked unusually pale and his cousins were surprised when he didn’t want to play outside in the snow. Suzanna made an appointment with the pediatrician for the coming week. Although she assumed her son was merely coming down with something, Suzanna and Giovanni’s father, Bret, had noticed several troublesome things in the weeks since Christmas and instinctually, they compiled a list for the pediatrician: a few bruises in odd places, a pale complexion, an irregular appetite, and a notable lack of energy for routine, everyday activities. The Hartmans thought Giovanni might be anemic and would possibly need a nutritional recommendation.

On the day of the appointment, Suzanna had to work, so it was Bret who took Giovanni to the pediatrician’s office. As the doctor examined Giovanni and reviewed the Hartman’s list of ailments, his level of concern was unsettling. Bret was informed that Giovanni needed immediate blood tests and x-rays. The doctor simultaneously warned him to prepare for some bad news. Suzanna raced from her office to the pediatrician’s, where she and Bret waited to hear the results of Giovanni’s tests. The Hartmans listened as Giovanni’s doctor explained the reality—their five-year old son would need to begin treatment for Leukemia as soon as possible. At that point, his immune system was barely functioning.

Giovanni was airlifted from Reno’s Renown hospital to Oakland Children’s Hospital, where he was diagnosed with Acute Lymphoblastic Leukemia (ALL) and admitted directly to the isolation unit. ALL causes white blood cells to reproduce immature cells at a very fast rate, crowding out healthy red and white blood cells and leaving Giovanni extremely susceptible to germs and infection. The Hartmans remained by Giovanni’s side at Children’s for eighteen days. Suzanna recalls, “Our life was turned upside down. We didn’t know what all was going to be involved, how or where we were going to do treatment, what this meant for our family. We were so scared and so emotional and of course, trying to put on a brave face.”

The doctors inserted a broviac catheter in Giovanni’s chest to aid in drawing blood and administering medication. In an effort to repress the cancer cells, Giovanni quickly underwent chemotherapy. He responded to treatment with minimal side effects and was released to Reno, where he was able to continue receiving treatments through the Pediatric Specialties Clinic at Renown. However, even after experiencing eighteen trying days in Oakland and facing a world turned upside down, the Hartmans still could not return to their home. They would have to wait until several parts of the house could be remodeled to create a more sterile and safe environment for Giovanni’s repressed immune system. The family moved in with Suzanna’s parents and Bret quit his job so that he could stay with Giovanni and work on getting the necessary renovations finished.

The Hartman’s finally moved back into their home shortly before Suzanna went into premature labor and delivered Giovanni’s sister, Isabella, a month and a half early. As Giovanni was in some of his most intense treatment, he was allowed only quick visits to the hospital during which he was required to wear a mask and limit his exposure to other people. Inevitably, he began to ask tough questions and express some of his fears, especially for his new baby sister. “He was scared of so many things. Scared for the baby. Scared of being sick, and scared of cancer. We had to be straightforward and honest, but we just tried to follow his lead on questions and keep positive.” Suzanna recalls. Giovanni will be in maintenance therapy for three years.

He has taken three trips back to Children’s for bone marrow aspirations required to regularly test his bone marrow. He is just finishing his first twelve-week cycle of treatments and should be able to start kindergarten, once his steroid reactions are under control. He sees a therapist to help him talk through some of his fears and questions, but mostly, he is ready to turn six and get back to the business of being a regular kid. Giovanni was extremely excited to learn that his broviac will be removed in January—just in time for his sixth birthday and a special trip to Disneyworld with the Make-a-Wish Foundation! He has big plans for swimming and doing the “special things” at Disneyworld with his family. Mom says Giovanni is simply ready to “get back to normal and do the stuff everybody else does.”

David’s Story

by Suzanna Hartmann, May 2009

When 13-year-old David complained of a sore knee that started to swell, his parents, Kristi and Bryon, took him to Urgent Care and were told it was a sprain. When the swelling got worse they took him to his doctor, who ordered the bone tumor revealing MRI. A week later, David was off to Oakland Children’s Hospital for official diagnosis and treatment.

Over the course of the next week David had countless tests and procedures, all the while enduring a great deal of pain. The week finally culminated with David’s official diagnoses of osteosarcoma, on October 18, 2007. Thus began David’s grueling course of chemotherapy and invasive surgeries

Osteosarcoma is a highly malignant, very rare, very aggressive primary bone cancer and it had spread to his lungs. A total of nine metastasized nodules were surgically removed in March and April. Then David had a limb-salvage surgery on February 4, 2008. Lucky to not need his leg amputated; instead this surgery replaced 2/3 of the right femur and knee with titanium. During recovery he had an unrelated and almost fatal complication with his stomach and bowels, an intussusception. David would spend his 14th birthday on April 12, 2008 in the PICU recovering from the second lung surgery.

After almost one year of treatment, David’s last chemo was celebrated with a party at the family’s church. The end of chemotherapy was a momentous occasion, but it is not the end of treatment for David. To keep up with his normal growth, David had surgery to lengthen his leg and will have others. Due to the aggressive nature of metastasized osteosarcoma and that there is no cure, David will have to be continually monitored with scans for the rest of his life, and could experience a late side effect of leukemia from two of the chemotherapy drugs he has taken.

David has been through some of the worst cancer that cancer can throw at a kid and bravely lives with this new reality every day. Despite completing his chemotherapy, David still travels down the long road of recovery, working hard at physical therapy three days a week and trying to get back as much teenage normalcy as possible. About her youngest son having cancer, Kristi Koury has this to say, “We still find it so very surreal; and unreal!” And unreal it certainly is.

The following is an excerpt from David’s website written by his mother Kristi:
Osteosarcoma turns beautiful young children into warriors wise beyond their years. Fighting battles that only they can face. Deciding to endure, they hang up their lives on a hook in the corner. Soccer jerseys, football helmets, hockey sticks, basketballs, scooters, bicycles, dirt bikes, skateboards, and Barbie dolls stand still and silent now. They are armed anew with the uniform of the cancer patient. Broviac catheters threaded deep into their chests, bald heads, bodies hairless and thin and covered with scars. Limping slowly and steadily on heroic limbs absent of their natural bones, they just keep moving forward. They are all tremendously brave kids. I know some of these kids; besides mine. Some I only know through a website; Chris and little Teagan I know personally. I know these children’s lives have forever been changed by an uninvited monster called Cancer~~Osteosarcoma in specific. These children live from hospital visit to hospital visit; chemo to chemo; and (in David’s case) from surgery to surgery. I don’t know any adult that could handle the brutality of this life, and yet I watch my son, Chris, and Teagan endure it. Are they happy about it? NO! Do they do it anyway? Yes, they do. They put life into perspective. They prove what is really important and what is trivial. And I have seen more courage in the three children that I have watched go through this than I have seen in all the adults in my life put together! I know I wouldn’t handle it as well as these children have. I am so proud of David, Chris, and Teagan! They are truly amazing children. I really wish all of you could know David, Chris, and Teagan~~you would be richly blessed by these children.

Bailey’s Story

by Christine A. Smith and Tim D. Smith,  Bailey’s Nonny and Papa, January 2009

Bailey Johnson was a happy 9 month old, or so we thought.  On December 29th, 1999, that happy baby was diagnosed with stage IV Neuroblastoma.  Our lives were changed forever.

Seeing such a small baby suffering so much and going through the many ordeals that he has had to endure would break even the toughest heart.  Seeing the pain in our daughter and son-in-law’s eyes was almost too much to bear.  We all pulled together to help in the fight of our lives.  We were told that if Bailey lived through the night, he would certainly not see his first birthday!  Those are the words that no grandparent or parent should ever have to hear.

After surgeries too numerous to count, interoperative radiation therapy, external radiation, many bone marrow aspirations, 13 rounds of high dose chemotherapy and a bone marrow and stem cell transplant all by the age of 2 1/2, Bailey relapsed three more times and had to continue on oral chemotherapy for two years.  He was a four time cancer survivor by the age of five.  He has been without treatment for three years and almost five years CANCER-FREE!

All of Bailey’s treatments are at UCSF Medical Center in San Francisco which is five hours away from our homes in Lake Tahoe.  Many thousands of miles have been driven to find the level of care that should be available to all children.  Bailey’s medical bills have well exceeded the $2,000,000 mark.  Funding cuts for research have made it next to impossible to hope for a cure.  Each day, many children are diagnosed with childhood cancer and each day, too many of those children lose their battle to the monster.

Our lives are spent raising both funding and awareness about childhood cancer.  We participate in St. Baldrick’s and have raised over $100,000 in the last three years by shaving our heads to help find a cure.  We have participated in Alex’s Lemonade Stand, Relay for Life, and the Northern NV Children’s Cancer Foundation Golf Tournaments as well as many other  fund raisers for foundations that are fighting childhood cancer.  We speak at events on the subject of childhood cancer being the number one killer of children from disease.  Every waking moment in our lives is touched by this disease.  Our entire family has been affected by Bailey’s cancer diagnosis.  His pain and suffering have been experienced by not only our family, but entire communities.  If it were not for support of said family, friends, communities and miracles, Bailey would not be here to attest to the need for more funding.

Needless to say, Bailey has proven the doctors wrong and has survived to be almost ten years old.  He continues to have very expensive testing every six months and we will never be sure if things will ever be okay for him.  Bailey faces numerous other challenges related to his cancer.  He has some hearing deficit, is missing several of this adult teeth and will have to have years of extensive oral care, diminished muscle strength and has growth problems with no real hope for normal stature, and has some difficulties with learning due to all the poison that he has had to take.

Through all of this pain and suffering emerges a bright, caring, happy child who lives for ice hockey.  Even though his stamina is limited, he gives it his all when he is lucky enough to be on the ice with his little brother, Cameron, and his team.  He loves golf and is learning to ski and enjoys camping and fishing with his family.  Bailey’s journey is still one of hope.  With continued support of Bills such as the Conquer Childhood Cancer Act, children like Bailey will continue to keep that hope alive.